Each word that we come across we seek its meaning through personal experiences, through reading, through everyday conversations, even through all our senses. Some words are easy to roll off our tongue and we crave them to be a part of our lives (i.e. happy), but others we come across can carry a unique weight that we really don’t want in our lives (i.e. disappointment). When words have a negative gravity to them, we tend to continue to seek the understanding of what it means not only as a word, within life to ourselves and to others. As a result, we often find ourselves trying to resolve the word, because of its meaning, or we push it as far away as we can. Some of us can leave certain words behind and get a general gist of what they may or may not mean, while some of us are involuntarily affected, knowing the meaning of the word in a greater depth than is desired.
Chronic illness is a term, two words that holds negative weight to many people within this world. It seems to be a word that is sought out to learn in depth what it means, or it is considered unimportant and unnecessary to others knowing only its existence. Yet no matter how you view it, almost everyone you ask will tell you a different definition of what it means to them. Why is this? It is a word that can take a hold of someone’s life in such a unique way. It is an umbrella term. It not only explains what someone is going through in a general sense within their body, but it also shares the burden of the nuances chronic illness has on their everyday life. It is a term that describes what is happening to them overall, a term that links to the definition of their personal body health, a reminder of what is going on not only within me but along side them within their life.
Two simple words of the human language that holds a vast spectrum of burden, health, hope, lack of hope, the thought of dreams lost, life altering circumstances, trust in unknowns, and so much more. It tends to be a negative piece of our lives that change our lives forever. But our lives don’t shut down. Not for a second. We press forward, we try to go through all the motions and we seek to have the best life despite what we were given within this world, under that term. This blog was created to look at all the nuances of the weight that now our lives hold, the realities, and the new formulas to make sure that we can create our best lives within the unwanted, but given circumstances. It is a term we have and can personalize within our own lives, based on our experiences, our conversations, our senses.
Nuanced Living will bring a spectrum of topics that can help you and learn with you to be the best advocate for yourself within chronic illness life. It is so important to me have Nuanced Living be a constant resource, so please feel free to contact me if you have anything you want to share or have questions about!
So what is chronic illness really? What does chronic illness mean? Why is the meaning so different to each of us?
What is the formal “definition” of chronic illness?
Chronic* – continuing or occurring again and again for a long time
Illness* – an unhealthy condition of body or mind
Chronic Illness – an unhealthy condition of body or mind that continues or occurs again and again for a long time
What are some types of chronic illness?
To all those who are dealing with chronic illness or walking alongside it let me take this moment to tell you I may not directly point out your specific chronic illness.
What does chronic illness look like?
Technically chronic illness is a “disease” or “sickness,” that is constant. This means it is limited to a specific type of sickness or disease, along with the fact that you can have multiple illnesses at once. Chronic illnesses comes in all kinds forms that are very different from one another, that can literally affect every single part of your body. It is a general category of illness that can’t be treated one hundred percent by any source of medical treatment. It can be lessened, or even be in remission but it will never fully leave our bodies. It can affect a piece of our body or the entire whole.
Chronic illness is diagnosed by a doctor, which they will be able to tell you if it is something that is chronic or not, along with all treatment options. They should absolutely be upfront about every aspect of the process and what it means that they or another doctor can provide within your life.
What are some specific examples of chronic illness?
Honestly there are too many to write down in one post.
Chronic illness is a general term to cover a category of individuals suffering from a number of different types of illness, but it is a very broad term, like talked about early.
Next there are general terms that break down the categories in a second level. These terms give a more general idea of what is going on with you, but don’t describe it specifically. A few examples include; autoimmune disorders, autonomic disorders, cancer, chronic pain, etc. These terms are typically given when doctors are trying to figure out exactly what is going on, but know what part of the body it is affecting, but not specific. It is also an easier way to describe what is going on with you to others, because often time people are familiar with the specific medical name for what is going on.
Lastly there is the more detailed medical name for specifically what you have. This is the term the doctor will give you. Note sometimes even within these categories there are even more breakdowns, but not always. A few examples include; breast cancer, cervical cancer, chronic obstructive pulmonary disease (COPD), complex regional pain syndrome (CRPS), lupus, migraines, postural orthostatic tachycardia syndrome (POTS), ehlers-danlos syndrome (EDS), etc.
Note: The list above is not limited to any source or regulations of what individual states consider chronic illness for disability benefits.
What is my personal experience with chronic illness?
You probably are wondering by now, why is Lindy writing about this topic and how does she really know what it means? Chronic illness is a tough topic and oh I hope I do it justice! It is something I live with and have for a while. Although it doesn’t define me it affects my life daily. I have multiple chronic illness. Some of my personal chronic illnesses (not in order of how I suffer from them) include; postural orthostatic tachycardia syndrome (POTS), several different heart issues, migraines, chronic venous insufficiency, chronic pain, endometriosis, autonomic issues, chronic obstructive pulmonary disease (COPD), and several more. A few of these I have had most of my life, while others I only have had within my adult life. I feel that throughout my experience there are some things we can all relate to, even though the way we relate to them may be very different then one another. Nuanced Living was formed in hopes of creating a great resource to be the best advocate for ourselves under our circumstances. I am learning to find my ever shifting new normal and I would love to hear how you do it! Please feel free to contact me or comment below because I would love to learn from you!
What does chronic really mean to you?
Who is affected by chronic illness?
Everyone can be affected by chronic illness. It can affect anyone, anywhere for a multitude of reasons. Also if you have some form of chronic illness it doesn’t mean that you couldn’t get another form within your life. I promise this is not to scare you, it just means that we are equal and fundamentally the same and it can affect anyone.
If you at all are having any health issues, I highly recommend seeking a medical perspective.
How can chronic illness affect us?
Chronic means that it is a forever thing. Since there is such a range of chronic illnesses, there is a range of how this can affect any one of us on a regular basis. Sometimes it happens in segments, days on of having issues or days off from having issues, sometimes it is a constant thing with the possibility of going into remission, sometimes it is constant with worse symptoms during certain times, or sometimes it is completely random on how it shows itself. With these different affects we create our own new patterns within our life based on what is happening with our body.
No matter how it may show itself it is a aspect of health that you carry. When diagnosed we are put within different categories (like discussed above), these groups allow you to see how other individuals who have similar diagnosis live their lives, what treatments have worked or not worked, and a hypothesis of what your journey may look like. These groups can be very beneficial at times when understanding what is going on, along with surrounding yourself with similar people and the right doctors, but it is good to know that each individual is still going to have a very different journey along the process. Nuanced Living is here to help you find whatever your journey may be, and making it go as easily as possible.
What is the process if you or a loved one is diagnosed with chronic illness?
Within the idea that we feel something is wrong with our body, seeking a doctor to get information and a diagnosis will be the first step. You may or may not be diagnosed with a chronic illness. It may even take a while at times to figure out the right diagnosis for you. Once a doctor has diagnosed you with a specific diagnosis they will create a treatment plan, sometimes seeing if you might go in remission or not, along with seeing if the treatment plan they created will work or not, adjusting if needed. During this process you will personally start the path of trying to take care of your life and your body as much as possible. This process will be an ongoing conversation here on Nuanced Living.
Why is it so important for everyone to know about chronic illness?
No one with chronic illness asked to have chronic illness rather it is something we constantly ask to have taken away. But yet it affects our lives in every single aspect and reshapes it, but it doesn’t define us. It makes us carry its weight and displays private aspects of our body despite the unwilling part of our soul. It can be connected to anyone at any point within their lives. There is no stereotype or box to define what happens when we have chronic illness, other than we know that our lives have forever changed.
It is so important for everyone to know about it for several reasons. The patient needs to be aware of what is happening to their body and how can they take care of themselves as much as possible within the new circumstances to be able to live their best life despite chronic illness. The caregiver needs to understand, as much as they can within their limits about, what is happening to the person that experiences chronic illness and how to be the best health partner. The viewer of ones life, the passersby, friend or family member needs to understand that this person within their life has had a drastic change within their life and what does that mean for not only the patient, but also themselves. The person who has no experience with chronic illness, the out of body experience person, one who never realizes they see it, needs to understand on some level the significance of how chronic illness shapes the world around them without them even knowing it.
We need to understand our environment, our culture, the people that live within this world that hold a depth of this term “chronic illness” that no one really understands and the patients themselves are trying to understand. No one will ever grasp, even a fellow chronic illness patient, the body you are now living in and every piece of what that means, along with how it truly is to be a serving steward of yourself despite what is happening. It is important for all of us to know as much as we can to have an awareness and ability to see the nuances of life within chronic illness.
Conclusion… So what is chronic illness?
Thank goodness we are all different, I wouldn’t like to think that one person is the same as another, we are all supposed to be uniquely beautiful! Unfortunately when it comes to chronic illness, those differences may seem overwhelming and nerve racking when trying to figure out what now happens within our lives. Nuanced Living is here to make those overwhelming differences be more manageable and making the shifting changes beautiful. So in the end what is chronic illness? Something that has affected your body, your health, your life, but something that will never fully go away.
In a very simple description of chronic illness; it is a health issue that affects your body and your entire life.
A question for you!
How would you best describe the term chronic illness? Are you living with it or amongst it?
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Know you are not alone and I look forward to getting to know you and learning with you!
T r u l y , L i n d y
* Sources: definition of chronic and of illness: Webster dictionary
image source: @NuancedLiving